Parenting in my shoes – My child has a clearly visible birthmark

Christine from Dublin is 37 and married to fellow Dub, Stephen. They have one child, Elizabeth who is 15 months old and Christine is just over 5 months pregnant with their second baby.

Little Elizabeth has a visible strawberry birthmark in the middle of her forehead, which has resulted in plenty of stares and other unwelcome reactions from others in public.

Here Christine talks to me about coping with these reactions, her future worries for her daughter and how it feels to be the parent of a child with a prominent birthmark in an age that’s obsessed with appearances.

The pregnancy…

I found out I was expecting in December 2016 and had a really normal pregnancy (although I had nothing to compare it with!). I had morning sickness up until about week 14 but nothing severe, mainly nausea. I was able to continue with work, had normal blood pressure and attended the ‘Domino’ Scheme where my maternity appointments alternated between my GP and Midwife. I’m quite tall so Elizabeth had plenty of room to stretch out and it was quite late in the pregnancy before I had to start wearing maternity clothes. So all in all pretty much the dream pregnancy!

My due date was the 27th July so when I started having twinges on the 8th July I presumed they were Braxton Hicks and honestly thought I’d have another 5 weeks of pregnancy ahead. Even so I’d also had a bit of “show” that week so my husband, Stephen said let’s get the hospital bags in the car to be on the safe side (like, how thick was I when I look back on it!!). I went to work that day, came home, got changed, and went out for dinner with my friends, all the while Elizabeth was planning her big entrance. Stephen collected me from town and I went to bed around 10 or 11pm. I was restless and was starting to realise that the twinges (contractions you fool!) were getting more intense and were actually quite regular until pop went my waters at 1am. We started timing the contractions then and realised it was time to hot foot it to the Rotunda. I arrived around 1.30/1.45am and was assessed as being 2 or 3cm so we had “plenty of time”. There was no delivery room available so we waited in the public waiting room and then the assessment room until eventually it was time to head upstairs. I got to the delivery room at 4.03am and promptly asked for an epidural however, the next words from my mouth were “I need to push” and Elizabeth arrived at 4.16am on Sunday 9th July weighing 7lbs 7oz. A squidgy little bundle of amazingness.

Early indications…

There was no indication at all beforehand and in fact, there was no birthmark visible when she was born. The Haemangioma (also known as a Strawberry Birthmark) appeared as a tiny red dot when she was around one week old.

First impressions…

Elizabeth had some broken blood vessels around her eyes from the delivery so I presumed that this new red dot on her forehead, between her eyes, was something similar. She had a really faint, small red dot on her stomach too and the “stork mark” on the back of her neck which I think is fairly common. I don’t remember being concerned initially, it was so small and I had no clue what it was so I guess I just assumed it would disappear. Over the weeks as it grew we were obviously concerned but were reassured that they were common and that they tend to disappear themselves.

Baby Elizabeth 1 day old

Medical opinions…

It was the Public Health Nurse that visited us at home that first took note of it and advised that we keep a check on it. It’s amazing how quickly they grow and week by week it started getting bigger and bigger. We started to research them through “Dr Google” of course but there is a lot of mixed information and when we visited our GP he said they were common and didn’t seem worried by it.

Historically the “watch and wait” approach is taken with Haemangiomas and with us being completely naive and uneducated about them, that’s what we did. We waited and watched as it continued to grow, and grow. It was at Elizabeth’s 3 month check up with the Public Health Nurse that things finally got moving. The Nurse was not at all happy with what she was seeing and recommended I push for a referral to a dermatologist to get it checked. Some Haemangiomas are slightly raised red areas but Elizabeths is “mixed” so has the red part but also has a large bump underneath that makes it more pronounced.

Our GP referred us to Temple Street straight away but we were initially told it could take a year to get an appointment. From what we had read online this was fairly useless as haemangiomas grow quite rapidly up to age one before they start to recede. We decided to request a referral to the Private Clinic instead and were seen by Dr Fiona Browne within 2 weeks. In fairness to Dr Browne she said that even if we had been referred to her on the Public list she would have prioritized Elizabeth because of the location of her H (being close to her eye the skin is thinner and susceptible to ulcerating/scarring plus there was the possibility of her eyesight being affected). So we saw Dr Browne and within a couple of days were back in Temple Street to undergo tests and start treatment. Elizabeth takes an oral medication called Propranolol twice a day. It’s a beta blocker so her blood pressure and blood sugars were monitored in hospital during her first dose and we have monthly appointments now to get these checked and also to get weighed and have her dose altered as she grows bigger.

Not all babies with haemangiomas’s are given treatment, it can depend on the size and location of them but usually if they are large or near the eye, mouth or nose, treatment will be given.

The reactions of others to Elizabeth…

It varies but the most common reactions are:

Ignoring it, shock, telling a story about someone they know that has/had one

Elizabeth at 2 months

Its impact on my experience of parenthood…

I can’t express how much I adore Elizabeth. She made me a Mammy. Something I didn’t really know I wanted to be until I had her. She has the most beautiful blue eyes and a little button nose and squishy cheeks. She loves animals, bubbles and going to the park. She’s amazing. Most days I don’t even think about the birthmark. It’s a part of her and a part of what makes her unique and individual.

Except some days there’s that “if only” thought that pops into your head. If only she didn’t have the birthmark. If only it was somewhere else and not in the middle of her forehead. If only we didn’t have to spend every visit outside the house waiting for a look, frown, stare, question, comment. If only we could have baby photos without it. If only I wasn’t such a horrible, superficial person and could just ignore it. There are a million and one things that she could have that are a million times worse…

The treatment plan…

So, the disappointing thing for us has been that the Propranolol which is a miracle medicine for so many people has had little to no effect in shrinking Elizabeth’s H (it’s as stubborn as she is!). In saying that there’s no way for us to know how big it could have grown if she hadn’t started taking it so in fairness, at the very least it may have stopped her H from ulcerating or affecting her vision.

We visit the Dermatology Dept. in Temple Street every 4 weeks. The Nurses and Consultants there are brilliant. They check that Elizabeth’s blood pressure and blood sugars are normal. She is also weighed to make sure she is on the correct dosage of Propranolol for her weight and for now that’s the treatment we’ll continue on until we make a decision about whether to seek to have it surgically removed or leave it to see if it will involute naturally.

The hardest part of having a child with a visible birthmark…

In some ways I think this will change over time but the silent looks are probably the hardest thing to deal with. Should I ignore them? Should I pull people up on them? I always try to catch the eye of the person and give them the big smile if I can. It’s funny how this sometimes takes them off guard and they realise they have been “caught out”.

Worrying about what to teach Elizabeth to say as she gets older and making sure we instil her with enough confidence to ensure she’s not affected by future comments is another thing I think about a lot. It’s not something that we want to make a huge issue of but at the same time, it’s there and we’d be stupid to think that it won’t be something that she’ll become more aware of as she grows up.

Thoughtless comments…

Kids are great and much more open about asking about it (much to the mortification of their parents which makes me laugh). I always try to tell the kids a little bit about it before the parents embarrassedly whoosh them away.

Kids comments

“She has a big red lump on her head”

“What’s that thing on her head?”

“Is it sore?”

“Eurgh” followed by recoiling in horror dramatically

Adults comments

“What happened to her head!?”

“Did she fall?”

“God love her”

“You must have gotten a terrible fright when you saw it”

(The parent of the recoiling child above) “That little girl won’t be bold again will she, her Mammy gave her that because she was bold” – I’m not sure why I didn’t tell that man to STFU actually.

To be honest a lot of the worst ones are the “looks”. I think if someone comments it’s easier to open a conversation and explain what it is but I get really upset sometimes when we’re out and I can see someone up ahead clocking it and then proceeding to stare with a frown on their face as they get closer.

I often say it’s like they don’t even realise that they are staring at a human baby like she’s an alien or a curiosity (OK and now I’m crying, sorry). I have left our local shopping centre in tears because of the stares. There are days it doesn’t bother me at all and then there are days when I feel like shouting at people. Sometimes I think about getting leaflets printed with an explanation about haemangiomas and keeping them in the buggy so I can hand them out to the people who stare…

Elizabeth with Mum Christine

Elizabeth’s prognosis…

Generally haemangiomas grow rapidly until age one and then start to shrink or involute naturally. The involution is very gradual though and could take up to age ten. The Propranolol usually speeds this up but in our case this hasn’t happened.

We have been offered steroid injections as a next step but Elizabeth would have to go under general anaesthetic for these and we have decided that as the haemangioma is not growing or causing any complications with her eyesight, we’ll hold off getting these done. There’s also no guarantee they will actually work.

For us, it’s looking like we would have to leave it and just continue with the Propranolol and see what happens or we could decide to have it removed. Again, this would be under general anaesthetic so not over the moon at the idea but I think if we do decide to go with the surgery it’ll be before she starts school. This plays on my mind a bit though. Who would we be getting it removed for? Elizabeth? Ourselves? Other people? The kids in school?

Elizabeth aged 1 year

My fears for Elizabeth…

Thankfully she’s too young now but as she gets older my biggest fear is for when she starts to notice people looking at her differently or understands the comments. School is obviously a big worry too although younger kids are generally more accepting and once you say “that’s her strawberry birthmark, it doesn’t hurt and will disappear when she’s older” that’s basically that for them!

I think part of my fear is that we equip her with the strength of character to be able to respond confidently to any queries or remarks herself if/when the time comes… All anyone wants is for their child to be happy and healthy.

If you meet us…

Personally I prefer to be asked about it. It means I can explain what it is and educate people a little bit. We meet lots of people that have experience with them and tell us the stories of their sisters, friends or neighbour who had one on their arm, leg, head and it just disappeared. But for every one of these people you meet more, just like us at the beginning, who don’t really know what it is or anything about them.

Advice for other parents in the same situation…

One of the best things that happened to me was when I came across a couple of Birthmark Support Groups on Facebook (Hemangioma Parents Group and Birthmark Support Group). Thousands of parents of babies and children with haemangiomas, some bigger and more complicated than ours and some smaller. Some on topical treatment, some on oral medication, some having surgery and some deciding not to treat at all. No judgement, no staring, just understanding and support.

Knowing that we weren’t the only people out there with these feelings and worries, and coming across so many other parents who felt exactly like we do was amazing and a huge relief to me. It gave me a lot of perspective, took away some of the guilty feelings, and gave me more confidence in handling comments when we’re out in public.

I would recommend any parents of a baby with a birthmark to ask for a referral to a Paediatric Dermatologist who can assess it and then help you decide whether to treat it or not. You don’t have to just watch and wait.